Resources for Parents and Children
Families faced with Lyme or other tick-borne diseases are met with unique challenges that are not always understood by medical care providers, schools, friends or even other family members. Chronic illness that can be caused by many tick-borne diseases including Lyme, Babesia, Bartonella and others can have devastating impacts to physical, emotional, social, and financial health for you, your children and your family. Parents often face challenges in supporting the education of a chronically ill child. Some children may require accommodations through a 504 plan or Individual Educational Plan (IEP) to assure educational access and success for their children. Below we have provided resources for parents and children that can be incredibly helpful in navigating these challenges.
Whether you are the parent of a sick child or a parent that is sick as well, remember that you are not alone!
Mothers Against Lyme
We are mothers, and mother-advocates, concerned with the impact of Lyme Disease and its co-infections on pregnant women, children and families. COTBDAA President, Monica White, is a founding member of this organization.
When your Child has Lyme Disease: A Parents’ Survival Guide
This book by Sandra Berenbaum, LCSW and Dorothy Kupcha Leland is filled with valuable information that parents need to know about Lyme to help navigate and cope with the complexities of this illness for their children. You may also visit the authors at Facebook page at: facebook.com/WhenYourChildHasLyme
Lyme Disease is No Fun: Let’s Get Well!
This book is written by Mary Wall MS Ed, CCLS, a Columbia graduate student, and edited by Colleen M. Smith, a peer-review medical journal production editor and Johns Hopkins graduate. Each of these woman has battled Lyme disease as a child. Author Amy Tan has written the back cover note. It is published by Lyme Disease Association, Inc., national leaders in Lyme research, education, prevention and patient support. It is a resource written in language that conveys the experience of chronic Lyme disease to children ages 8–12.
Little Bite BIG TROUBLE A Bird’s Eye View of Lyme Disease
Author, Mom, Lyme patient and advocate, Sarah Schlichte Sanchez tells a beautiful story filled with understanding, compassion and hope for young children and families faced with the unique challenges of Lyme and chronic disease. Visit Sarah’s other resources at lymevoice.com.
The Lyme Times
LDO advocates nationally for quality accessible healthcare for patients with Lyme and other tick-borne diseases. Two special issues of the Lyme Times publication of particular interest to parents are the Lyme Times “Children’s Treatment Issue” and The Lyme Times “Children’s Education Issue”. Together they provide a comprehensive overview of issues facing children with tick-borne disease, with proposals for solutions in many areas. Joining LymeDisease.org allows access to these valuable resources and other tools that can assist patients in navigating this complex disease.
Lyme Family Resources
Sandy Berenbaum, LCSW, BCD, Lyme-Literate Psychotherapist
“Lyme disease can be a debilitating illness having a profound effect on interpersonal relationships and a patient’s ability to function at home, in school, and in the workplace. Making matters worse, most chronic Lyme patients suffer from delayed or inaccurate diagnoses prior to finding a doctor who will treat their illness effectively. Some patients have spent months or even years trying different treatments that don’t work, since their diagnosis was, in fact, wrong. Patients often feel isolated and trapped when those around them do not understand the complexity of their illness and what they are experiencing.” Sandy provides resources for parents, educators and children dealing with these complexities of Lyme in the family and the schools. Visit lymefamilies.com for more information and to download the valuable resources below:
- BOUNDARIES 101 FOR LYME PATIENTS: When chronic Lyme disease patients are diagnosed, they enter a different world. The lack of understanding of the complexities of this illness outside of the Lyme community makes it important for patients and families with Lyme disease to establish boundaries, to set limits with those around them who do not understand what they are going through, to protect their time and energy, and to get the support they need. Here I discuss the boundary issues, and offer strategy for dealing with these issues when they come up.
- KIDS AND LYME DISEASE: HOW IT AFFECTS THEIR LEARNING: Lyme disease can have a profound affect on a child’s ability to learn. This article discusses the complexity of the problems that children with chronic Lyme face in the school environment and what can be done to support them.
- TICK-BORNE DISEASE IN CHILDREN AND ADOLESCENTS: A MEDICAL ILLNESS/A MULTIDISCIPLINARY “CURE”: Lyme is a complex illness that, when chronic, often effects the brain, causing impairments in mood, cognition and attention. An integrated, or team approach to treating Lyme patients can provide help, support, and solutions to problems generated by the illness, beyond the medical treatment itself.
- REFLECTIONS ON LYME DISEASE IN THE FAMILY: Lyme disease in a child or adolescent can have a profound effect on a family. This article touches on some of the issues that face parents and offers parenting strategies to help ease the journey.
- LYME DISEASE SCREENING PROTOCOL: This is a simple screening tool designed to help mental health practitioners determine whether Lyme disease could be an underlying cause of presenting problems among children or adolescents. My hope is that by using this tool, more cases of Lyme disease may be recognized by mental health practitioners, resulting in earlier medical diagnosis and the need for less complex and lengthy treatment. If a tick-borne illness is present, comprehensive medical treatment can lead to more successful resolution of mental health problems, as well.
- IDENTIFYING LYME DISEASE IN THE SCHOOLS: Education regarding Lyme disease is an important service we can provide to our schools. This handout can help teachers, nurses and guidance counselors identify children who may have Lyme, leading to early diagnosis and treatment. Since Lyme disease can have a profound impact on a child’s ability to learn, school professionals have a different view of the child than the parents or pediatrician might.
Gifted Students and Lyme Disease: What Educators, Counselors and Parents Need to Know
Patricia A. Schuler
Author of the article “Gifted Students and Lyme Disease: What Educators, Counselors, and Parents Need to Know” , an invaluable resource when trying to both nurture and accommodate a gifted student with Lyme in the education system. Patricia provides resources for both parents and educators to best meet the needs of gifted students You may request a full text of this article at researchgate.net
McMaster Midwifery Research Centre
Link to survey
The McMaster Midwifery Research Centre is conducting a research project on the perinatal transmission of Lyme disease. This research is being done in order to gather information about Lyme disease in pregnancy and the research priorities of people who have experienced Lyme disease in pregnancy. This project will lay the groundwork for further research on perinatal transmission of Lyme disease. They are seeking women currently or previously pregnant to participate regardless of pregnancy outcome. Link to survey here.
Pediatric Lyme Disease
Dr. Anne Corson
Dr. Anne Corson provides a talk on pediatric Lyme disease and co-infections. Visit www.lymepa.org/CorsonPediatricLymeTalk.pdf
PANS, or Pediatric Acute-Onset Neuropsychiatric Syndrome, is an encephalitic-type autoimmune disease that can be induced by different illnesses: strep throat (PANDAS,) mycoplasma, pneumonia, flu and/or Lyme Disease. This site is a source of information and support for families and children impacted by Pediatric Acute-Onset Neuropsychiatric Syndrome.
For additional resources in understanding the complexities of Lyme and other tick-borne infections and the tools to navigate these illnesses visit: